guestions about Fibromyalgia

I have been seeing Dr. after Dr. with unexplainable symptoms,I have sever pain inmy head and my whole body aches and burns. I have trouble turning my head it actually makes me dizzy I also have recently had trouble with my legs they feel weak like I have a hard time walking (Balance. I am being told that all my tests are fine, that I am fine yet I can not funtion.Every part of my body is off my eyes. even my tongue. This is waking me up at night , my muscles in my body spasming. I am told that Fibromyalgia is not real by one Dr. that it is just an anxiety and then another tells me it is real. If you have or have had any of these symptoms can you share with me how you dealt with them .I am scared. Thank you

Hi,
Welcome!
Yes, I have had all of those symptoms. Some of them when I only had CFIDS and the rest when the Fibro kicked in.

I know it is hard to find a good Dr. I am still looking in the town I moved to - after 5 years!

I see that you haven't filled in your profile, so I don't know where you live. If you live in a place where there are doctors of Integrated Medicine, you might find a good one. The Dr. who diagnosed me and who gave me the protocol I have lived on for 11 years was one of those.

Good luck to you in finding a doctor and in being diagnosed. Please , don't take anything for granted. It is important to get a diagnosis, just so that you don't have anything else, and not know it.

I have all the same ones you do. I have some one day and all one day and some of the others another day. I hate it. I can't make peace with having this disease. Good luck to you. I hope you have more good days than bad days.

When I read what you said about all the tests being "Fine" I had to go back and find a post from Baybe that she posted back in Oct 2003.

It stuck with me always and so I am copying a part of it hear for you.

Hope baybe doesn't mind....

" Well I got the results from both doctors and I'm Fine, yup, I am so fine that every thing they test for in blood and urine is great, not just average or well but Fine and Dandy. I am the healthiest most solid woman that feels like "death warmed over" walking the planet.
I take the vitamins, I eat incredibly well, I do as much exercise as possible and since I found out I was "Fine" I have even done some painting, as in "painting the new shed" and tearing the old one down, after all I am fine.
Only problem is I am in so much pain I can not stand it, I take my pain medication and sleep most of the day. I allowed myself to do this project because I have been trying to get it done for 6 years. So don't yell at me for doing too much, after all I am FINE.
My Question is why do they keep doing the same tests and repeating the same things over and over if they keep coming back F-I-N-E. It seems obvious to me if not to my doctor that I am not fine, that something is taking me "every which way but loose". Please, my dear friends, laugh with me, cry with me, be transported, but please don't tell me I am fine. Anyone have any ideas? "

What city are you in or near? It sounds like you need a good doctor who believes in fibromyalgia. Whether or not you have it, at least it can be given serious consideration. Have you looked at the tab above under Community and Doctor Referral? The Good Doctors list is mostly made of docs being recommended by other patients, or sometimes self-recommended. What kind of docs have you seen? Try to find a good rheumatologist who believes in fibromyalgia. It DOES exist, although unfortunately there are still rheumatologists out there who remain in the Dark Ages.

Keep persevering, sometimes the patients are the ones who have to keep pressing for a correct diagnosis. You need some answers for those symptoms!

I am 40 and I have had all the tests done I think they can do. I live in south Florida and I have been ro the University of Miami which I am told is excellent. Everyday for months now my life has been horrible, I guess like some of you. I have these severe episodes where my tongue contract , it does a wave motion and I have extreme pain and weakness , it gets so bad that my legs give out from under me.and I get lightheaded,like my balance is off. I can not get any answers except learn to live with it. I cant see how I can learn to live with this.My family an freinds hear that the tests are fine so basically I should ignore it.I am angry that this is ruining my life and relationships. I am not driving and I stay in bed alot, I feel horrible. At this point I feel like I am out there and know one can see me, its like I am screaming Im really sick and everyone is saying no your not. How do you get to the point of functioning, excersice makes it worse, walking I am to lightheaded and to go to work I feel to sick seversl times a day with episodes, like the muscles in my throat squeeze and I feel like I am choking. Any more information I can get would be appreciated. Thank you
[This Message was Edited on 09/09/2005]

Hugs tnovins; you may like to read 'the first year- Fibromyalgia' by Claudia Craig Marek to give you the knowledge to answer those stupid doctors who tell you it's all in your head (no, it's also in your muscles, joints, feet etc. - in fact it's probably in every cell in your poor body).Best wishes, hope you receive some proper medical care soon! x